SYMPTOM CONTROL IN THE LAST DAYS OF LIFE. Bradford, Airedale, Wharfedale & Craven

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Bradford, Airedale, Wharfedale & Craven Managed Clinical Network SYMPTOM CONTROL IN THE LAST DAYS OF LIFE Guidelines for Healthcare Professionals Bradford, Airedale, Wharfedale & Craven Signs and

1 Bradford, Airedale, Wharfedale & Craven Managed Clinical Network SYMPTOM CONTROL IN THE LAST DAYS OF LIFE Guidelines for Healthcare Professionals Bradford, Airedale, Wharfedale & Craven Signs and symptoms that suggest someone may be entering the last days of life: (NB for patients with an underlying progressive condition the background of a gradual deterioration over weeks/months is important) Sleepiness, difficulty waking, generalised weakness (conscious level may be reduced or patient may become unconscious) Difficulty swallowing (including medication), reduced interest in eating and drinking Loss of control of bladder and bowel function Restless movements (as though in pain) Changes in breathing pattern Noisy breathing Cold feet, hands, legs and arms Confusion and disorientation It is important to identify any potentially reversible causes for the patient s deterioration (the decision about how appropriate it will be to investigate and/or treat these should be discussed with the patient/family and the MDT) Potentially reversible causes to consider includes: Dehydration Infection Opioid toxicity Steroid withdrawal Adverse effect of other drugs Acute kidney Injury (AKI) Delirium Hypercalcaemia Constipation Hypo or hyperglycaemia

2 Fundamental to the practice of palliative care is an emphasis on individualised care for the patient. If symptoms fail to respond to usual measures, or if you are concerned that the recommendations given here may not be appropriate to the clinical situation, please contact your local Specialist Palliative Care Team (SPCT). SPCT advice can be sought from: Working hours (Mon-Fri 8am-5pm): BTHFT Inpatients: Hospital Palliative Care Team or #6479 / #6435 / #6571 ANHSFT Inpatients: Hospital Palliative Care Team or bleep 3148 / 3242 Bradford Community (inc Community Hospitals /Care Homes): Community Palliative Care Team Airedale, Craven and Wharfedale Community (inc care homes): Community Palliative Care Team Out of Hours: Contact On-call Consultant in Palliative Medicine via Marie Curie Hospice ( ) or Manorlands Hospice ( ) On Call CNS (7 day Airedale, Wharfedale and Craven ONLY) or bleep 3148 Key Prescribing Points This guidance is about managing symptoms in the last days of life when it is clear that the patient is dying. The following should be considered when prescribing for dying patients: 1. ANTICIPATORY OR AHEAD OF TIME PRN MEDICATION All patients should have as required (PRN) medication for symptom control prescribed, which includes: medication for the relief of pain, nausea/vomiting, restlessness, shortness of breath and respiratory tract secretions before they occur, unless there are contraindications. This means that symptoms can be controlled without delay even if they arise overnight. Where a dose range has been prescribed, start with the lowest dose and assess benefit. If patients require more than 2 doses in 6 hours, staff should seek medical advice. Examples of appropriate medication for anticipatory as required prescribing: Opioid analgesic subcutaneous (SC), hourly as required; dose depends on the patient, clinical problem and previous opioid use. 1/6th of 24 hour dose of any regular opioid. If not on a regular opioid, prescribe morphine sulphate SC 2.5mg to 5mg hourly. Anxiolytic sedative: midazolam SC 2.5mg to 5mg, hourly. Anti-secretory medication: hyoscine butylbromide (Buscopan) SC 20mg, hourly. Anti-emetic: haloperidol 1.5mg SC, 12 hourly. 2. ONCE THE ORAL ROUTE IS LOST. Think About: Is the medicine still needed? Consider if medication is still needed for comorbidities (see page 6) Non-opioid analgesia e.g. paracetamol, antidepressants, anti-epileptics can usually be stopped when oral route is lost: continuing opioids is usually sufficient. Anticonvulsants for seizures should be continued via an alternative route (see page 6). Is there an alternative route? Most opiates will have an alternative SC route Is a syringe pump required to administer necessary medications subcutaneously? A syringe pump is used not only to replace existing medication (e.g. regular MST Continus) but is titrated where necessary to take account of additional (PRN) medication 3. PROBLEMS TO CONSIDER Managing uncontrolled symptoms see page 3 onwards Managing acute and distressing terminal events see page 6 4. REVIEW AND ASSESS BENEFIT OF ANY INTERVENTIONS Review September

3 PAIN Opioid analgesics must NOT be used to sedate dying patients Sudden increase in pain: exclude urinary retention, constipation or other reversible cause. Paracetamol or Non-Steroidal Anti-Inflammatory Drugs (NSAID) (as liquid/dispersible). NSAID benefits may outweigh risks in a dying patient; can help bone, joint, pressure sore, inflammatory pain. If unable to manage via oral route and still requires NSAID, seek specialist If not on any regular opioid, prescribe PRN morphine SC 2.5mg 5mg as per anticipatory guidance If unable to manage oral medication, or requiring more than 2 doses PRN over 24 hours, convert the total 24 hour oral morphine to a 24 hour, SC infusion: Divide the TOTAL daily dose of oral morphine by 2. e.g. oral morphine 30mg = SC morphine 15mg /24hrs If already on oral oxycodone use SC oxycodone. Divide TOTAL daily dose of oral oxycodone by 2 e.g. oral oxycodone 15mg = SC oxycodone 7.5mg /24hrs Breakthrough (PRN) analgesia should be prescribed hourly as required: 1/6th of total 24 hour dose of any regular opioid, both orally and subcutaneous equivalent dose Total daily dose of oral Equivalent total daily PRN oral morphine dose PRN sc morphine dose morphine dose of sc morphine 60mg 30mg 10mg 5mg If patient is already using FENTANYL or BUPRENORPHINE transdermal patches, these should be continued in dying patients. If they have been requiring additional PRN opioid on a regular basis, with benefit, this can be added to a syringe pump. Ensure that both patch and pump dose are taken into account when calculating appropriate breakthrough dose. For patients with stage 4-5 chronic kidney disease, severe liver failure or elderly: - Use opioids cautiously. - Smaller doses will be required - Length of action will be increased (e.g. by 12 hours or more) - Continuous infusions are seldom required. - Opioids other than morphine may be better tolerated. Seek specialist advice AGITATION / DELIRIUM Sudden increases in agitation; exclude urinary retention, constipation or other reversible cause Consider a nicotine replacement patch in heavy smokers who may have withdrawal symptoms. NB: If requiring more than 2 doses of PRN medication in 24 hours, consider starting a 24 hour SC infusion via syringe pump.. Anxiety / distress Confusion / delirium Prolonged terminal delirium/ distress with no reversible causes midazolam SC 2.5mg to 5mg, PRN hourly haloperidol SC 0.5mg to 1.5mg, once or twice daily PRN (caution in elderly, give reduced dose) 1st line midazolam SC 10mg to 30mg (depending on previous 24hr requirements) and/or Haloperidol 3mg to 5mg over 24 hours in a syringe pump + midazolam SC 5mg PRN hourly, as required 2nd line Seek Specialist Palliative Care Advice If symptoms persist and you are unsure what to do or are concerned about side effects: seek specialist Review September

4 NAUSEA and /or VOMITING (last days of life) If already controlled with an oral antiemetic New nausea & vomiting 1 st line SC INJECTION 24HR SYRINGE PUMP PRN haloperidol SC 1.5mg up to 12 hourly, or 1.5mg to 3mg once daily (caution in elderly) Use the same drug in a SC infusion (e.g. metoclopramide, cyclizine, haloperidol). NB: domperidone should be switched to metoclopramide parenteral If requiring regular dose: commence Haloperidol 1.5mg to 3mg SC in syringe pump (max 5mg/24hr) SC 2.5mg to 6.25mg 6 hourly (max 25mg/24hr) SC 2.5mg to 6.25mg 6 hourly (max 25mg/24hr) 2 nd line SC 2.5mg to 6.25mg once daily. Stop haloperidol (or other antiemetic) and prescribe 6.25mg to 12.5mg SC in syringe pump SC 2.5mg to 6.25mg 6 hourly (max 12.5mg PRN /24hr) Seek SPCT advice Avoid cyclizine in severe heart failure Avoid haloperidol and metoclopramide in Parkinson s Disease Persistent vomiting due to bowel obstruction: an NG tube, if tolerated, may be better than medication, but this would require inpatient admission. MOUTH CARE IN THE LAST DAYS OF LIFE Dry mouth and thirst are common symptoms in people who are dying. Good mouth care can help prevent thirst and maintain comfort. Patients should continue to be offered oral fluids. They may be able to manage sips even in the last days of life. Where patients can no longer manage oral fluids, staff must provide regular mouth care. Treatment Mouth care should be offered hourly, especially for patients who are unable to take oral fluids. Where possible family/carers can perform mouth care, giving them greater involvement. Clean mouth using water and a sponge stick (depending on local policy) or a soft toothbrush. Pineapple juice can be used to cleanse. Avoid lemon and glycerin swabs as they can increase dryness. Oxygen therapy may aggravate dry mouth. Consider whether this is still required, or whether it could be administered via nasal cannulae rather than a face mask. Consider humidification if on > 4L/28% via face mask. LIPS DRY DRY MOUTH SORE MOUTH /CRACKED 1 st Line Petroleum jelly (NB if patient on Biotene Oralbalance gel Gelclair apply directly, undiluted. oxygen use water based lubricant e.g. aquagel) 2 nd Line Glandosane spray Seek specialist palliative care advice. Review September

5 BREATHLESSNESS A table or handheld fan should be tried, and a more upright position can help. Explanation / reassurance and promoting a calm environment is important Consider relaxation techniques (if appropriate) Oxygen may relieve distress even if the patient is not hypoxic. Try 2-4 l/min via nasal cannula unless contraindicated. If there are signs of Pulmonary Oedema, consider need for diuretics (e.g. Furosemide 40mg SC / IV) or seek advice from SPCT Intermittent Breathlessness and /or distress Persistent distressing breathlessness Midazolam SC 2.5mg to 5mg hourly, PRN as required or Lorazepam sublingual 500mcg to 1mg, 4-6 hourly, PRN as required. Opioid (hourly as required) if on regular opioid use the appropriate breakthrough dose for pain or breathlessness (1/6 th of the total 24 hour dose) if no opioid try morphine PO 2.5mg to 5mg PRN or morphine SC 2.5mg (see opioid conversion guidance page 3) If on regular oral opioid or benzodiazepine, convert to a 24hour SC syringe pump (seek SPCT advice if unsure) If has required 2 or more doses in previous 24 hours, consider prescribing syringe pump over 24 hours e.g. Midazolam SC 5mg to 20mg (dependent on individual need) + morphine SC 5mg to 10mg (if no previous opioid use) RESPIRATORY TRACT SECRETIONS Terminal secretions can be controlled in about 60% of cases; fluid overload, recent aspiration and respiratory infection increase the incidence. Reduce the risk by avoiding fluid overload; if symptoms develop review any artificial hydration / nutrition (IV/SC fluids, feeding). Any changes to artificial hydration /feeding should be carefully discussed with family, explaining clearly the rationale for treatment withdrawal. Explain cause of problem to family /carers and any changes to management Changing the patient s position may help. Oropharyngeal suction is rarely beneficial 1st line: PRN Hyoscine butylbromide (Buscopan) SC 20mg, PRN hourly as required (max. dose 120mg/24 hrs). 24 hr Syringe Pump If PRN beneficial, consider Hyoscine Bultylbromide 60mg via syringe pump (max dose 120mg /24 hrs) 2nd line Glycopyrronium bromide SC 200micrograms, PRN hourly as required (max. dose 1.2mg/24 hrs) Seek specialist If symptoms are still troublesome consider if there are signs of pulmonary oedema and need for diuretics e.g. Furosemide 20-40mg SC / IV. (Note: max 20mg/2ml as SC injection) Review September

6 ACUTE & DISTRESSING TERMINAL EVENTS Dying patients occasionally develop acute distress; this can be due to: Bleeding: catastrophic haemorrhage from the GI or respiratory tract, or an external tumour ACUTE pain: bleeding into a solid tumour, a fracture, or a ruptured organ. ACUTE respiratory distress, tracheal obstruction Management Where it is possible to anticipate this could be an issue, agree an anticipatory care plan with the patient, if possible, family carers and key professionals For severe acute pain or respiratory distress give stat dose of breakthrough opiate sc. Please note that higher doses may be required. If symptoms do not respond, double the previous PRN dose and seek specialist promptly. For catastrophic haemorrhage prescribe sedation e.g. Midazolam 5mg to 10mg IM stat dose in advance if the patient is at risk; warn the family. WHAT CAN BE STOPPED? MANAGING COMORBIDITIES IN LAST DAYS OF LIFE DIABETES AND INSULIN When a patient is dying imminently and focus of care is solely symptomatic decisions should be made regarding diabetes management given that oral intake is likely to be minimal. Discuss changing approach to diabetes management with patient and/or family, if not already explored. Seek advice from Diabetic Specialists if unsure Type 1 diabetes Type 2 diabetes Insulin should be continued in these patients Simplify insulin regime ideally once daily long-acting insulin e.g. Lantus or Humulin I at a reduced equivalent dose. Check capillary blood glucose (CBG) once a day prior to giving insulin Aim to run CBG 8-15mmols. (Priority is to prevent hypoglycaemia) 1. If below 8mmols/l reduce insulin by 10-20% 2. If above 20mmols/l increase insulin by 10-20% to reduce risk of symptoms or ketoacidosis Aim to stop capillary blood glucose monitoring and stop/reduce diabetic medication If unresolved symptoms that may be attributable to hyperglycaemia consider urinalysis, if glucose 2+ check CBG and seek advice from SPCT or Diabetic Specialists EPILEPSY AND ANTI-SEIZURE MEDICATION At the end of life, once the patient can no longer take oral medication required to prevent seizures, their seizures should be prevented with subcutaneous midazolam: Prescribe midazolam 20mg to 30mg over 24 hours via SC syringe pump (the diluent is water) and midazolam 5mg to 10mg PRN SC An alternative for patients on oral Levetiracetam is to convert to a SC infusion i.e. 1:1 ratio, seek advice from SPCT If the SC route is not readily available for PRN use (e.g. the patient is in their own home), alternatives include: diazepam rectal (PR) enema (0.5mg/Kg up to a maximum dose of 30mg PRN) buccal midazolam (BuccolamTM) 10mg PRN sublingually Increase the syringe pump dose if PRN doses are needed and effective If seizures persist despite midazolam 60mg/24hrs via SC syringe pump, seek advice from SPCT Review September

7 WHAT CAN BE STOPPED? MANAGING COMORBIDITIES IN LAST DAYS OF LIFE CORTICOSTEROIDS Steroids not contributing to symptom relief Steroids contributing to symptom relief (i.e. symptoms likely to recur if stopped such as severe headaches or vomiting after cerebral bleed) CARDIOVASCULAR CONDITIONS Angina Hypertension Heart Failure Stop at the end of life when the oral route is no longer available. If the dying process is already established, Addisonian withdrawal effects are not usually relevant. Convert to a subcutaneous (SC) bolus of dexamethasone each morning. Seek SPCT advice if unsure Medication can usually be discontinued without substituting an alternative once the patient is unable to take orally. The minimal exertion at the end of life minimises the risk of angina occurring. If angina symptoms are suspected, or there is particular concern, consider symptomatic management with opioids and seek advice from SPCT Antihypertensives should be discontinued in the last days of life and can often be stopped before then. Statins can be stopped if the prognosis is less than 1 year Mild-moderate: medication usually discontinued without substituting an alternative once the patient is unable to take orally because of the minimal fluid intake at this stage. Severe (e.g. the patient is dying from end-stage heart failure), then consider: Subcutaneous furosemide. Usually given as a SC bolus OD or BD or via SC 24 hours syringe pump: Seek advice from SPCT Opioids (See Breathlessness section page 6) NEUROLOGICAL CONDITIONS Parkinsons Disease Consider giving medication via an alternative route e.g. topical patch. Seek specialist. Unlicensed Use of Licensed Medicines ( Off label use) Use of drugs in these guidelines and their routes of administration are outside their product licences Off Label The unlicensed use of medicines is necessary when clinical need cannot be met by the licensed medicines available. The recommendations in this guide do include unlicensed use of licensed medicines. These recommendations are based on current accepted palliative care practice in the UK. In practice, approximately 25% of prescribed medicines for palliative care patients are used in an unlicensed way (e.g. given by subcutaneous injection when licensed for IM or IV use, or for the treatment of nausea and vomiting when only licensed as an antipsychotic). Further information regarding unlicensed use of individual palliative care medicines can be found in the current version of the Palliative Care Formulary Disclaimer: These guidelines are the property of the Bradford, Airedale, Wharfedale and Craven Managed Clinical Network for Palliative Care Group. It is intended that they be used by qualified medical and other healthcare professionals as an information resource, in the clinical context of each individual patient s needs. The BAWC take no responsibility for any consequences of any actions taken as a result of using these guidelines. Readers are strongly advised to ensure they are acting in keeping with current accepted practice and legislation, as these may change. No legal liability is accepted for any errors in these guidelines, or for the misuse or misapplication of the advice presented here. In difficult situations, please seek advice from the relevant specialist palliative care service. Review September

Care in the Last Days of Life

Care in the Last Days of Life Introduction This guideline is an aid to clinical decision making and good practice in person-centred care for patients who are deteriorating and at risk of dying. The patient